Our neurology appointment went very well. He really listened to everything and had some very sage words of advice too. He referred us to a speech therapy clinic which offers private therapy as well as some other programs. We are also seeing the neurodevelopmental team. He's sending us for a repeat EEG in July with an appointment following so he can read the results to us immediately. He upped Jack's dosage of Tegretol and will send us for blood work in 4 weeks. So luckily we did not have to go to the lab that day!

I had a MAJOR SCARE at the dietician's office. We went there for a quick weight check and the nurse put Jack on the scale and got his weigh in kilograms -- when she converted it to pounds she told us Jack was 20 lbs 7 oz. 6 weeks ago, when we started the duocal and Pediasure (more than his usual 1 can a day) he weighed in at 20 lbs 8 oz...which meant after all of our hard work he LOST an ounce...I was so upset and worried. I called the dietician this morning (who by the way is a SWEETHEART over the phone ) and expressed my concerns over Jack's loss and no gain with the duocal and Pediasure. Well she redid the calculations and GUESS WHAT!!!!???!!! Jack weighs 21 lbs 4 oz!!!!!!!!!! He averaged a gain of 4 grams a day and kids in his age range should gain between 4-10 grams a day...we are finally on track (even if it's the low end) for gaining. She said she would like to see him gain more -- but was pleased with how he's doing. We got to talking about some of Jack's issues and I mentioned CP and she said she has a 13 year old son with CP. I thought that was interesting. I guess I never figured her to 'get' what our life is like but obviously she must know (on some level) what we go through.

All in all I feel we had a great week of appointments. A lot of information, a lot of referrals and a lot of stress -- but all leading us somewhere. I was so afraid that I would end up hitting that brick wall but to my surprise everyone listened and wrote referral after referral. Wonderful news.

So I assume we'll get quite busy with all of the new paths we must travel but it's okay if it helps me help Jack.

I have a cute Jack story...Uncle Ben came over last week for pizza. We haven't seen him in a while so when he came in and said "HI" to Jack, Jack looked him square in the eye and said "Uh Oh" we laughed so hard. Jack's never said "Uh Oh" before and hasn't said it since! I know some of you will find it as amusing as we did!

Jack is learning to stand with his walker. I have to help him by reminding him to hold on and by helping him open and place his right hand. I also fix his feet so he has good balance then I can let go and he's standing like such a big boy! I always clap and exclaim how good he's doing and his smile says it all. He's proud too! I can ask him to step and he'll step once with his left leg. I have to ask him again to step and then I point to his right leg and after building up the nerve and confidence he steps again with the right leg. We then throw a HUGE celebration and I pick him up and spin him around. He LOVES this and we do it over and over. He's so happy and proud to be standing and stepping. The walker is quite light (made of aluminum) and it's amazing that he's just using a little bit of support and can stand for a long time. I think he likes the view too.

I took Jack to Wal-mart to get his 2nd year pictures taken. We got a coupon in the mail for a photo session and a nice big photo package for $3.88!!! No hidden fees -- I just had to sit and let them try to talk me into buying a larger package deal. What an excellent deal! Jack was a ham (of course) and was making everyone laugh at the photo place. I think it's going to be a cute picture. We get them back on March 17th.

We also decided to trade in Jason's black Honda Civic for a MINIVAN!!! I LOVE it. It's great. I used to exclaim that I would NEVER have a minivan -- just didn't see what all the fuss was about. Well, let me tell you, I get it now! We went for groceries yesterday and it was so much easier and less of a hassle to load everything! I also don't bump my head (or Jack's) or break my back trying to get him in and out of his car seat. I can't wait for all of you to check it out! It'll be great for our beach trips this year too!

Here is a list of a lot of new things Jack is doing in the last two weeks or so. Some of these we've been working on for OVER A YEAR by now. It feels good that certain things are starting to 'click' for Jack.

• Jack can play patty cake with BOTH HANDS! Upon request…

• He can point to his nose and mouth upon request…

• NO MORE BOTTLE!! Jack has moved on to a straw sippy cup that he sometimes holds on his own for completely independent drinking!!!

• Signs for more

• Can wave bye bye

• Says “Bah” for Ball!!! Only when prompted or reminded

• Says “Bubba” for bubble!!! Only when prompted or reminded

• Is repeating sounds more consistently, like pa pa, ma ma, da da, and ba ba as well as snoring, snorting, coughing and sneezing (he finds these SO FUNNY to repeat!)

• Can pick out objects from a line up like sock, ball, binky, cup, book, paper, etc.

• He can pull to stand very well when placed on his knees

• Is crawling so fast – still on his belly

• Gets back down to sitting position from standing at the furniture

• Can cruise couch without shoes over DAFO’s still won’t budge with shoes on

• Can take steps with hands held

I took Jack to the pediatrician this morning because he still wasn't feeling well and she said he has an ear infection as well as a cold. So we got some antibiotics and hopefully he'll be on the mend soon. She said it was quite an accomplishment to make it 2 years with no infections and having this be our first prescription for antibiotics was great. So we'll be taking it easy this weekend. Jack is continuing to do well in his DAFO's. I think his muscles are adjusting because he's complaining a bit when I put them on -- but once they are on he doesn't mind them at all. I can't wait until his physical therapist sees him this week! I will keep you posted on how he's doing. Send Jack some get well vibes!!

I took Jack to get his DAFO braces this morning. He was less than happy to be at the hospital for yet another appointment but was a real trooper considering he's still not feeling well!

Not 10 minutes after I put his DAFOs on Jack CRUISED THE ENTIRE LENGTH OF THE SOFA to fetch a box of tissues. He continued to stand and pull out the tissues one, by one, by one. We have been practicing cruising for almost a year and he would get one or two steps and then his legs would stop working for him. This completely AMAZES me because I was starting to wonder if he actually had the skill -- here it turns out he's probably had the skill for quite some time he only now has the extra support (DAFOs) he needed. I am excited way beyond words right now. We still have so much to work on but boy is this a great boost when his skills were somewhat at a standstill lately -- gross motor wise that is.

Thanks for reading!!!

YAY JACK!!!

Jack seems to be feeling a lot better this morning. He's coughing some but doesn't seem to be feeling icky anymore. Last night he ate a good dinner (pizza, tater tots, mixed veggies, peaches and milk) and this morning he had 2 pieces of cinnamon toast and a Danimals drinkable yogurt smoothie. I think I have whatever Jack had...I am not feeling so well today. We canceled therapy for today and will get back into the swing of things next week. I got a phone call yesterday afternoon that Jack's DAFO's are ready and we have our appointment for fitting and instructions tomorrow morning. I am curious to see how Jack reacts to the braces. I know it will be an adjustment at first, but I have hope that he will gain balance and stability and he'll see how much they help him! I've added a new photo album called Jack's Preemie Friends -- you must check it out and see all these cuties! There are 3 right now and I will be adding more as I get them. I talk to their moms through an online forum for parents of preemies.

Jack has a cold... and I worry because the last time he got a viral thing he quit eating/drinking and we ended up in the hospital for a couple of days. He's already refusing food and drink but I was able to get a little bit in him regularly yesterday. His doctor said to keep an eye on him, but so far his slight fever (100.5) went down to normal with one dosage of Tylenol and it does not sound like it's in his chest. Please keep your fingers crossed that this passes SOON. This morning Jack is not any better or worse -- he has a close to normal temp now but his congestion seems a little worse...my mom had a huge box of ice-pops in her freezer and was kind enough to bring them over to us yesterday. The first ice-pop didn't go over well. Last night he ate pieces of a grape ice-pop from a bowl...messy but got it in! He is quite cranky but hey, I am too when I am not feeling well! He was worrying me because he really isn't hungry or thirsty but every once in a while he'll take whatever I am offering. This morning it was room temperature white grape juice and diced apples -- and nothing else! But at least it's SOMETHING! I canceled his therapy yesterday and today and hoping he's well enough for tomorrow's session. I will keep you posted!

An update on my update...I was very happy when I checked my Jell-O and it was 'done' so Jack could have it for part of his snack this afternoon. Well, Jack's never had Jell-O before...the look on his face was PRICELESS! He didn't know what in the world I was feeding him...knew it smelled and tasted good when he licked it, but couldn't understand why it was so cold and slippery. He would get the spoonful in his mouth and then dig it out with his fingers...he did this over and over. He likes it but doesn't quite understand it. We'll work on this too. Ha ha!

Hello everyone! I just wanted to give a quick update on Mr. Jack. He's always been my great eater and he continues to amaze me with what he can pack in his tummy in a day. I guess the dietician's advice felt like criticism, because she never mentioned the good things. I know it's her job, but it's hard not to take it personally! I actually called her and asked for clarification on the 40 ounces of fluid Jack needs in a day. My concern was (and is) filling him up on Pediasure and carnation instant breakfast (which are both basically meals in a can) would lessen his appetite. She said we can give him clear liquids as well such as juice and water, and things like Jell-O and ice cream can count towards his total fluids too. So after mixing a huge batch of Jell-O I feel better knowing I don't have to fill him up with all of those heavy liquids. I've been giving him the Duocal with every meal and offering him more to drink throughout the day. I have to write down what he takes in a day to see if we are meeting our goals. So far he's keeping up with his 3 meals and 2 snacks and getting a little more than 20 ounces of fluid in a day...we'll just keep working at increasing that amount! It does sort of feel like our whole day centers around eating, but Jack's happy and that's all that counts! I will keep you all updated. Thanks for thinking of us!

PS -- for those wondering...duocal is a high fat and calorie powder. It sounds like it's really going to help with his weight gain!!

We just got back from the feeding team.

First the great points...the OT and SLP were thrilled with Jack's oral motor skills and they were impressed with his straw and cup (assisted) drinking and lip closure. So they only want to see him in the 'full' clinic in three months.

We will see the dietician monthly. The dietician seemed sort of hardened and as though she likes butting heads with moms of these kiddos. For everything I said she had an opposing argument. I felt like 2 lawyers arguing a case. I stayed very nice and very calm and spoke very clinically about the situation. But inside I was screaming -- this is my CHILD we are talking about here!!

She calculated him at 1250 - 1500 cals a day as to what he takes now. She said he isn't getting anywhere near the required amount of liquids...he gets about 20 oz of fluid a day and she would like him to get 40 oz of fluid a day PLUS his 5 regular meals. It's never going to happen. I will try my best but the more you fill a kid (or anyone) up on liquids, the less solids they'll eat.

What she suggests in addition to the high calorie foods is 40 oz of Pediasure, carnation instant breakfast, carnation juice w/ protein, or whole milk. Plus she wants 2 tsp Duocal for each meal 3-5 times a day.

I am hoping this puts the weight on Jack but it feels like I am being set up to fail. I mean realistically I can't see him taking 3 meals, 2 snacks AND 40 oz of liquid. Like I said, I will certainly try and hope for the best.

She said he's technically 'failure to thrive' and if we needed to use the label to get Pediasure or Duocal we will but it's not in the report at this time. I feel so badly because I feel like it's all my fault because I make all of Jack's food, I sit with him for all of his meals I am the one that gives in or gives up when a meal isn't going smoothly. I am the one that researches high cal recipes, shops for the ingredients, prepares the meal to sometimes watch my precious toddler throw it all on the floor for my already FAT dog to eat. Sigh...

I am not going to let myself get discouraged. We are going to try this 'plan' for a month and see what happens. Thanks for listening!

Jack is doing well! We've had a busy few weeks with appointments and it's been so COLD I hate to leave the house. Jack is now crawling faster and faster as well as trying his hardest to pull to stand. He tries to use his upper body without bringing his legs along...we have to remind him that his legs are there to help him! After a few tries (and me supporting him under his butt) it clicks and he finally gets up! He looks so proud when he does it. He can take steps with two hands held and needs less support as the weeks go on. Jack was fitted for DAFOs (dynamic ankle foot orthotics) this morning. They are plastic braces that go right below his knee. Jack wasn’t sure what to make of the casting. They sat him on a table with me sitting next to him and put both legs in plaster casts to create a mold. They cut them off and are sending them away to get his DAFOs made. I am looking forward to getting them because I believe it will make all the difference in his standing, cruising and eventually walking!

Jack has remained seizure free since being put on Tegretol late this summer. He adjusted well to his meds and now knows the drill each morning and evening! We had a check up with his neurosurgeon in December and he only wants to see him back in 9 months time instead of our usual 6 months.

Jack doesn't have any words yet except mama, dada, and baba (for bottle) he has a few signs but isn't consistent with them although just yesterday he constantly made the sign for ‘more’ when he wanted more Goldfish crackers. He understands very much of what we say and I am waiting for what goes in to finally come out! He can follow simple requests like brush hair, pet puppy, where's daddy?, get your sock, etc. One really exciting accomplishment is doing pattycake upon request (WITH BOTH HANDS!!!) For the longest time Jack would completely ignore his right hand but as the weeks go by he uses it more and more. Over Christmas we learned that he can rip paper with two hands. It's so great to see him using both hands together!

He's eating all kinds of table foods -- basically everything we eat. I am so proud of his progress in this area. Even though he eats well and eats high calorie foods he is not growing as well as his pediatrician would like. We went to his ped for a weight and growth check and he weighed in at 20 lbs, 12 oz and 33 inches tall. He is declining slightly on his own growth curve so the ped referred us to the feeding clinic. Our appointment is this coming Tuesday. Please send all the positive thoughts you can for that appointment!

HAPPY NEW YEAR!!! We had a wonderful Christmas -- there's so much to write about! I will post an update this week with new pictures and some cute Jack stories!

Evening update: Jack's doing just fine! He's not at all bothered by what happened this morning...his red mark faded and doesn't look too bad. I gave him motrin before bed just incase he's a little sore. Shew -- and to think this won't be the only boo boo!!

Jack's first accident!! I was sorting laundry this morning in our bedroom and Jack was playing on our bed dialing the phone and listening to the operator (a newly found source of entertainment -- just hope he doesn't run up my long distance bill) well I had my back turned for 1.2 seconds and when I turned around I saw this pair of little feet straight up in the air -- I screamed and lunged towards him almost able to grab his ankle...too late Jack fell off the bed onto his forehead and sort of bounced and landed on his back...he SCREAMED and I ran over to him...when I picked him up he looked at me as if to say "WHAT HAPPENED?!?!" and he cried for a while as did I. He has a red bruise on his forehead -- other than that everything seems fine. He went down for his nap at 11:30 and I've already checked on him 3 times. I know he's okay -- but I am still shaken up. Guess I have to get used to these things now that he's getting into everything. I feel like a horrible mommy though even though I know it was an accident. I did call my mom and she reminded me of all the times we fell as kids and were fine. Well, must run and check on him again! Please keep Jack's little head in your thoughts!

We have some sad family news. My grandma Olga (Jack's great grandma) passed away Sunday, November 28th. We are relieved that she is no longer suffering but so sad because we miss her so much. She loved Jack (or as she called him "My Jackie") and loved to hold him and hear him 'talk' to her on the phone. The funeral will be this Friday. Jack is doing very well -- there's so much to be PROUD of! He's eating anything and everything in sight. He LOVES food and wants to eat whatever mommy and daddy are eating. He ate lots of Grandma Linda's Thanksgiving Dinner (and most of the leftovers too) as well as a second Thanksgiving Dinner at Grandpa Bob's....he loved Grammie Tina's sweet potato casserole too! We have been taking Jack out as usual. After letting him recover for a week or so and with his pediatrician's encouragement we feel comfortable shopping and eating out with our very social Jack! Jack is crawling and getting into trouble and he's becoming more steady on his feet and is daring to cruise along the couch and coffee table. Sometimes his excitement gets ahead of his feet and he crashes to the floor -- usually he just laughs and tries again. We are working very hard to strengthen his legs and trunk muscles to make standing and cruising easier for him. We also must practice taking steps with two hands held...he does well when you hold him under his arms or at his elbows but it gets harder for him with less support. Although he is making progress!! He's also 'talking' much more as well...although NEVER around the speech therapist!! I don't think he's made a peep around her yet! Too funny!! I've added new pictures -- check out the November 2004 album! We are remodeling our kitchen and slowly and surly we're making some progress. To check out our photoblog copy and paste the following web address. www.wilhelmfamily.photosite.com

Jack is feeling better and better each day. Today he was actually interested in crawling around and playing with his toys He still has runny diapers but they are getting less and less and he's getting plenty of fluids and is eating some so hopefully he'll be back in full action soon. Thank you all so much for your thoughts during this horrible ordeal.

Usually we have such great service at that facility (although we've never been to that ER before) -- I am upset that this happened.

I am also so freaked out about Jack getting sick again. I thought we were sort of 'in the clear' because he remained totally healthy from the time he was discharged from the NICU. Now 20 months later he's in the hospital. Did we just get lucky for those 20 months? Is Jack not as healthy or able to fight off bugs as well as we thought? Would this virus have put any child in the hospital? Part of me wants to go into deep seclusion like we did last year (under doctor's orders), but I don't know what to do. We have a follow up with his pediatrician on the 22nd and I plan on talking to her about my fears. For now I have no problems with staying in and being super diligent about making sure we avoid anyone with a cold or bug. As always hand washing is a rule when you walk in our door so that hasn't changed. I wish I had a scrub sink on my front porch -- HA HA! I know I had someone tell me that they'll never get used to this whole handwashing thing and they even wondered if they'll have to wash their hands till Jack's 18 -- well...maybe!!

Jack had been sick for several days. It all started Tuesday night around 11:00. I had fallen asleep on the couch while Angie was rocking Jack to sleep. I was awoken by the sound of vomiting upstairs and Angie’s cries for help. “Jack is burning up!”

The fever was barely controllable even with a combination of Motrin and Tylenol. On Thursday, when it became apparent to us that the sickness was not subsiding, Jack was brought the pediatrician’s office. After blood work and a urine cath showed no obvious signs of a bacterial infection, the ped felt the illness was viral and the best thing to do was to keep Jack well hydrated.

Jack took in small amounts throughout the day, but was very miserable...even lethargic, and was slowing becoming dehydrated. Later in the evening Jack was becoming increasingly irritable and would wince in horrible pain if he wasn’t lying flat. The pain combined with unrelenting fever resulted in our decision to take Jack into our local ER around 11:30 Thursday night.

We were seen relatively quickly by the ER doctor. He was an older gentleman who did not show any obvious signs of fatigue, but he was by no means energetic. He was very kind, but we felt that his examination of Jack should have been a bit more thorough. In fact, I had to point out that Jack was dehydrated and also that his lymph nodes were swollen. In addition to the examination, Jack also had blood taken and a throat culture. Some time passed and the blood work came back as being normal, besides some resolved confusion that it was high in sugar, which was due dextrose and saline IV fluid.

Some time passed and the doctor proposed to us that he perform a spinal tap on Jack to see if his spinal fluid or shunt showed any signs of infection. We nervously declined and asked to be transferred the Medical Center ER. Jack has a long history with specific departments and doctors at the Medical Center, and if anybody was going to stick a needle in Jack’s spine, it was going to be his neurosurgeons. Jack’s neurosurgeon was on call thankfully and the ER doctor explained Jack’s situation to him. The Medical Center ER then accepted Jack as a patient under his neurosurgeon.

More time passed, and then around 4:30 AM Jack was transferred to the Medical Center by ambulance. Angie rode with him and I follow in the car.

Jack was immediately examined by three people and his vitals were taken. We felt that Jack was finally in good hands. We were informed that Neurosurgery was notified or our arrival and everybody left the room.

Hours passed. While we had a nurse assigned to us, we felt completely alone and not taken care of at all. We asked three times for Tylenol for Jack and got none. It took multiple requests for diapers that we finally got some. Jack had a fever and we were unsuccessful in getting his temperature taken. Although we had informed the examiners at the beginning of the Medical Center ordeal that he was on IV being treated for dehydration, no fluids were given to him.

Finally after not being told when to expect neurosurgery, one of Jack’s neurosurgeons visited us a full 3 hours after our arrival. She thought that there was no shunt infection or shunt malfunction and even decided that a head CT was not necessary in order avoid Jack’s sedation. We were very pleased at this news...especially since there was no need for any spinal tap. In fact, Jack’s neurosurgeon thought it was a very good choice not to let a sleepy, yawning ER doctor perform such a delicate procedure.

We had expressed our urgency in getting Jack’s other medical issues attended to (i.e. IV fluids, Tylenol). We were then told by our absolutely worthless nurse that she can not do anything because the ER doctors refuse to see Jack. Still in the room, the neurosurgeon asked the nurse if she could write the order. The nurse said yes.

We were appalled. It was FIVE HOURS since our arrival and Jack was not being treated for anything. Jack was on his third day of no food or drink I expressed my anger and demanded that we speak to someone who had the power to fix the situation.

A few minutes later, a person with the official title of “Patient Representative” arrived and apologized profusely for the inactions of the hospital. He immediately had Pediatrics exam Jack. From the point on, we felt very taken care of.

Later in the evening, still in the ER (we did have a private room), Jack’s main Neurosurgeon visit us mainly to apologize for what happened earlier in day. Through this apology, we learned that we were caught in the middle of a department feud that has caused this same situation before. The ER doctors refused to see Jack because he was admitted under Neurosurgery.

Even though Jack could have had a life threatening situation, we could not get medical attention for FIVE HOURS in a hospital because of bureaucratic breakdown and intra-department quarrels. All of this meant nothing to us as Jack’s parents. We didn’t’ care who could write the orders as long as SOMEONE was caring for our very sick child.

They ordered so many tests – chest x-rays, abdominal x-rays, a shunt x-ray series, more blood work, another urine catheter, were done. His white blood cell count was low but for the most part the tests came back within normal range. The final diagnosis was probable viral infection. Poor Jack was poked a prodded so many times and he was feeling so miserable our hearts broke for him.

We went without sleep for two days – and spent the entire time in ‘ER Limbo.’ We were promised a room on the pediatric floor which never happened. Although by Saturday we told them to not bother transferring us. We had a hard time getting anyone to look in on Jack – in fact, a lot of our calls using the call button were not answered. Countless times one of us had to go find someone to get Jack what he needed. We did end up with a very nice nurse who really did her best to check in on Jack and really listen to our concerns.

This whole ordeal was frightening enough and the added stress of not getting immediate care was horrible. Although once all the red tape was worked through we did see excellent doctors that listened and cared very well for Jack.

Jack was discharged Saturday to come home. We were so happy! Sunday he ate and drank well, but has had diarrhea each time. We were told he could dehydrate again very easily but we’ve managed to keep a lot of fluids in him. This morning (Monday) he had breakfast and seems to be back to his very cute little self!

We are taking it easy this week – we canceled all of his therapies and appointments this week to avoid over working him and to give him lots of rest and time to recuperate. Plus his white cell count is still a little low and we don’t want to expose him to too many germs or bugs.

Thank you all for your thoughts during this time. We really appreciate all the well wishes and help from our friends and families.

The pediatrician said her gut tells her it's a viral infection, but she did a urine cath and sent us for a blood culture to rule out anything bacterial that would require antibiotics. His ears were clear as well as his lungs. She called and the preliminary results show no growth -- so her thoughts are it's a virus. Jack also broke out in a small rash (a sure sign of viral infections). Jack is dehydrated and she told us to avoid getting ourselves admitted to the hospital we need to pump 2-4 ounces of pedialyte into him EVERY HOUR. She told us to give it with an oral syringe if needed. My poor baby is really not well -- I pray it passes soon. Also, to treat the fever she told us we can use one teaspoon of children's motrin every 6 hours. I am tired and spent from worry. I will keep you posted.

I was SO freaked out last night! Jack went to bed early (before 8:00 PM) and Jason was away...right when he got home Jack woke up so he went and got him and rocked him while we all watched TV. Well right when we were getting ready for bed (around 11:30 PM) Jack woke up with such a pitiful cry and cough...I ran over to his room and scooped him out of his crib. He was burning up and sweaty and all of a sudden he vomited several times. I took Jack's temp and it read 102.5!! Even though I am an 'ex-reflux mommy' I was so scared -- this was his first high fever and his first ever 'sick vomit' he was teary-eyed, sweaty and every shade of green/gray imaginable. I went through my mental check list for a shunt malfunction and decided not to panic unless the vomiting continued. About 15 minutes later I was able to give him Tylenol and he kept it down. He was still green and pathetic looking so we all set up camp down in the living room. I held him until 2:00 AM and finally put him in his pack and play. He didn't wake up or get sick since last night. This morning he's acting a little better, his fever is down to 101.5, and he held down 4 oz of pedialyte and some dry toast. I think he's feeling icky but I am not as freaked out as I was last night. I know this is normal kid stuff but man is it scary the first time it happens! I am calling the doctor this morning -- but really dread going there if this is just a bug. He's napping right now after a dose of Infant's Motrin -- let's hope that fever stays down. Please keep our little man in your thoughts.